New Here!

[Chris G]

Hello all. I'm newly diagnosed - November 2010......and glad to join your group! My first flare occurred in 2007, and resolved (or went to sleep) by itself after I had seen about a dozen (clueless) doctors. I was not diagnosed at that time.

Now, they're saying "suspected" Wegener's because I have not yet allowed a sinus biopsy (the ENT said he would need 5 or 6 large biopsies, under general anesthetic). From all I've read, sinus biopsies are notoriously inaccurate, and the invasivness of this surgery scares me to death!

Upon my initial meeting with the ENT, he scoped my nose, sinuses, throat, etc., and considering the multitude of other symptoms which point toward WG, he said he was comfortable with a WG diagnosis, based upon what he could see with his eyes. The crusting in my nose at the time was pretty heavy! Other symptoms were: years of chronic sinus problems; eustachian tube dysfunction; ear infection; hearing loss; scleritis; cough; loss of voice; shortness of breath;unbearable fatigue; night sweats; light headedness/dizziness; can't concentrate (surely there are others I've forgotten). And I guess I'm one of the few P-ANCA positive cases - probably another reason they are pushing for a biopsy.

I have no kidney involvement at this time. There is one tiny nodule in one of my lungs that they will keep an eye on. I take MTX, pred., and Bacrtim. While trying to lower the pred, some of my symptoms are returning, in mild form. The rheymy is talking about changing meds as the MTX is likely not working well enough.......but again, she's pushing for biopsy confirmation.

The most troubling symptom I have at this time is the pressure in my head........light headedness (feels like my blood pressure is thru the roof, but it's not), and absolute inability to concentrate! Sometimes I feel like I shouldn't be driving. I feel as though I've had 2 glasses of wine on some days. Can anyone tell me if light headedness & trouble concentrating common (or uncommon) symptoms of WG? With treatment, these symptoms had improved, as did my other symptoms. But now they're scaring me.

Oh gosh....sorry so long and BORING - I promise to be less wordy in the future! Any info would be so appreciated!!
Chris

[Sangye]

Hi Chris, welcome to the group! It sounds like you're not under the care of a Wegs specialist. Where are you located?

The light-headedness and inability to concentrate could be due to the pred. What dose are you on? What do your docs say about those symptoms? Is your blood pressure high-normal?

[Kathie28]

Welcome Chris I am still new to understanding Wegners myself just diagnosed in January, however, I do have the lighhead feelings since being on Pred. I am down to 40 now but still have the drunken feelings.

[elephant]

Chris glad you are here for our support. Your story sounds a little like mine, be careful....I think your Wegeners is not controlled and you need to see a Wegeners specialist. We can advise you where if needed. Check out the Vasculits Foundation's website.

[pberggren1]

Hi Chris:

Welcome to the Forum.

What are all the meds and dosages you are on now? Do you know your latest blood work results like CRP and ESR?

I can understand if the ENT wants to do a biopsy but it sure sounds like Wegs to me. Usually the sinuses are not biopsied themselves, rather the inside of the nose is. That is why he said it would be under general anasthetic. Although he may be able to go into the maxillaries with a scope type of instrument and get samples from there, but not likely he will go that route.

I wish you the best and please keep us updated. You may need to see a Wegs Specialist right away.

[Chris G]

Thanks for the welcome!

To answer a few of the questions.........I live in Michigan, and am seeing rheumatologists at the University of Michigan. I guess do realize that they are not WG specialists, but after years of simply trying to find someone who could FINALLY diagnose me, I am just happy to have found them. I've been reading posts here on this site for a month or so, and I've seen all of your Cleveland Clinic recommendations. I plan on taking your advice there, and I will seek an appt with them shortly (will they insist on a nasal/sinus biopsy??). I'm currently taking 25mg MTX weekly, 17.5mg pred daily, and Bactrim 3 days a week (folic acid, calcium & vit. D suppliments too). Historically, I've always had slightly low blood pressure. Currently,my blood pressure has been hovering around 130/85. I believe it is higher than I'm used to because of the pred??? Labs: the P-ANCA is my only consistently positive marker. ESR was always within normal limits. CRP was elevated once - can't remember the number, but it was only a couple points above normal.

Yes, I agree that the WG is not completely under control - the rheymy does as well. She has suggested that the MTX is not as effective as hoped, and that we likely need to try a different med. This is why she has asked me to see the ENT again, for status on my nose and sinuses - and to push for a biopsy that I'm not interested in having!

I'm very concerned about the light headedness, headrushes, dizziness, pressure in my head, and trouble concentrating. These are symptoms that I had BEFORE beginning meds, and when my pred dose was at 30-40 mg, these symptoms went away. So I don't feel that being on pred caused these symptoms, I feel that they are returning because I'm lowering the pred, and the disease is not under control.......does that make sense? The other troubling symptom I've had is a tight feeling on the right side of my neck - as if blood flow to the carotid artery is restricted. This is another symptom that I had PRIOR to being diagnosed, that improved when I was on higher doses of pred, but has returned upon lowering the pred. I've had an ultrasound on the artery, and am waiting for the results. If bloodflow is restricted, I supposed that's the reason for the light headedness. But if that's not the case, I still wonder whether these symptoms sound like WG.

I feel like I'm constantly self-diagnosing! It's so frustrating, but it's what I've been doing since 2007, when I knew what I had, but couldn't find a doctor who believed me (or one who knew his head from a hole in the ground!)
Thanks for listening gang!! Any more thoughts or advice, please throw it my way!
Chris

[Hammy8241]

"She has suggested that the MTX is not as effective as hoped, and that we likely need to try a different med"

They may move you on to Mtx injections as the next stage as more of the drug is absorbed by this method than by oral. (not a problem, very easy to do and painless and despite what you may think does work). As mtx is the least bad of a bad bunch of drugs on offer, it may be better ot try this than moving to a harsher drug.

[Chris G]

Thanks Hammy. I asked whether we could increase my MTX to 30mg, but didn't even think to ask her about injectible MTX. I will ask her that when she calls me later today!
Chris

[Hammy8241]

Thanks Hammy. I asked whether we could increase my MTX to 30mg, but didn't even think to ask her about injectible MTX. I will ask her that when she calls me later today!
Chris

25mg is normally the max dose they go to with the oral. With the injection the dosage can be lower (20mg) due to the greater absorption.

[Brooke]

Welcome to the group! I have had many of your symptoms. My guess is the methotrexate is not working and you are having a flare. I was on methotrexate as well and it didn't help so I was switched to Rituxan which helped me a lot. I never asked about doing the methotrexate injections so maybe that could help you.
Good luck to you and feel free to ask questions or vent your frustrations on here!